First SJS Rheumy apt and lymphoma

[Katybarstool]

Kimi

I missed your news earlier, as I m a little behind with reading the threads. I just want to let you know that you and in my thoughts and prayers. Good luck for the 12th.

Kathyx

[wednesday mc haggis]

Kimi

wow! so much in one day, your head must be spinning, alot to absorb.

Theyve tested you, on top of it, emailing other docotrs personally, so from that aspect theyre on the ball, and it is at least something good.

I know right now it must be scary and hard to take on, but as youve read, it is slow growing and treatable, and it seesm your docotrs are good ones and will leave no stone unturned.

keeping you in my thoughts and sending you light, its no whinning or whinging, its just fact honey, and though its not nice news, its at least ben detected and going to get sorted, your in my thoughts

T x

[TerriJ]

Kimi,

Can't really add much more except my good thoughts are being sent your way.  Please take care of yourself.

Terri

[Kimi]

Thought I would lat ya all know I have not fallen off the face of the earth!! I am still here, reading but with very little time to write. But here is a update on what has been going on.

The lymphoma concerns: well I saw the hematologist and she said I may indeed have a low grade lymphoma and we could do biopsies but even if they took out lymph nodes all over my neck they may or may not learn something! I would just have a bunch of holes in my neck. Plus at this point they would only wait and watch anyways as I have no symptoms. She also said I have extremely reactive lymph nodes as well.  So I left the office with a list of things I need to watch out for and orders for neck ultra sounds every 3 months for the next couple of years. If any symptoms do occur I need to get in ASAP and we'll start some type of treatment. I am fine with doing this.

As far as the SJS: All my blood work came back good, Yeah!!! But I still have SJS, LOL, lip biopsy and symptoms. Since my blood work was good the Rheumy is starting me on Lyrica. I start that in the morning. I have had to ween nearly off of my nurontin in order to start this. I have good hopes that this will help with the pain and nurothropy. Would be so nice if my toes did not burn so bad in this hot weather. I also will be part of a study on nurothopy and SJS. I need to call them tomorrow to get an appointment. Rheumy also wanted me on Exevac??? (sp?) But I am having to wait on that as we just can not afford the $24 copay. The $24 for the Lyrica was a hard enough hit to the budget.  I know these meds help but a person can only afford so much!!! A total of $48 in new meds copay is about 1/5 of our monthly food budget!!! We just don't have it. I have thought of writing to the companies to see if they can help but they rarely ever will if you have medical insurance coverage of any kind.

The Rheumy is considering giving me Rituxan a she feels it will help with the pain and stiffness I have as well as with the lymph nodes. We will talk more on it in July when I see her next. Not sure how I feel on this as it seems to be a kinda scary drug. She is first going to talk with the hematologist on it.

Life has been busy here with trying to get the garden in and getting ready to go and see my daughter and family and then on to a dear friend's for a few days. I am looking forward to all this but the 8 hour car ride is going to take a toll on me, shorter rides always do. So we are planning on LOTS of pit stops and walking to help ease things.

Think this is about it, Oh, my pug dog is doing quite well now that they are leaving her on predisone. She developed a auto immune disorder last memorial weekend and will drop so low in her platelets that she starts to hemorrhage! So fun to have two auto immune things on one family! LOL

Lovingly, Kimi

[Linda196]

Welcome back, Kimi, glad to hear you seem to have things under control. Your rheumy sounds like a keeper, good plan, proactive, and yet cautious enough to involve other specialists, and your hematologist is a keeper, too!

Sorry to hear about your little dog, but at least the two of you can share an extra bond!

Enjoy your trip, remembering always to take it easy, protect yourself from sun and excessive heat, and keep up with your medication schedule...I always find it very easy to miss doses when I'm travelling. Let your daughter know she's expecting "visiting royalty", and allow her to pamper you, and focus on the visit, not side trips and local attractions.

[Chickpea]

Hi Kimi

Thanks so much for letting us know how you are.  It sounds as though your doctors are being very sensible and treating YOU, rather than following a protocol.  That's so good to hear.

I hope you have a restful visit.  I love Linda's idea of 'visiting royalty'!  Here in the UK - where we still have that antiquated system of royalty and nobility - royal visits have to be prepared for carefully.  Apparently a new bathroom/toilet has to be built because the Queen can't use one that anyone else has previously!  Maybe you don't need your daughter to prepare quite that carefully but you certainly deserve to be cosseted!

Take care - Chickpea

[JannaLee]

I agree with Chickpea and Linda! 

Sending you sincere wishes for comfort and wellness, Kimi honey! 

Janna

PS I went to the yarn shop in Grand Rapids today with my mom.  She bought a darling pattern to knit a pair of striped socks.